My Guiding Light; my International Women's Day inspiration

For many years International Women’s Day has just passed me by. Not because I haven’t been grateful for those who have paved our path, fought our battle and stood up for equality – whoever you are, whatever your religion and no matter what gender. In fact, I am surrounded by intelligent, driven, passionate and, above all, kind women. I’m incredibly lucky to have them in both current and past colleagues, clients and within my friends and family. I’d name them, but we’d be here all day.

But this year, it’s all about one woman. It’s about time I found the words to show my gratitude and admiration to the woman I am fortunate enough to call my mother.

Not completely dissimilar to my father, my mother has an interesting background - a nurse, followed by a midwife and finally deciding she’d return to university to become an archaeologist.

The reason my mother, Lynette, is my daily inspiration is quite simple – she continues to smile, despite the challenges life has given her.

Before I was born, my mother was diagnosed with Multiple Sclerosis (MS), an illness that to this day does not have a cure. It’s a diagnosis that comes with many question marks and no real clarity on what to expect for anybody involved.

Primary Progressive MS affects about 10-15% of people diagnosed with MS and has this name because, from the first symptoms, it is a progressive illness. Symptoms gradually get worse over time – however there is no set timeline, order of symptoms or manual. You could liken it to a box of chocolates - you never know what you’re going to get.

I tend to explain MS as a traffic jam – we’ve all been there, we all know the frustrations. Imagine your brain trying to deliver a very important parcel to your toes. In order to get there it needs to travel on the M1 (Southbound Nervous System). But part of the M1 has a roadblock, and your parcel can’t reach its final destination. The message your brain is trying to send your toes, to wiggle like their life depends on it, never arrives or arrives late (perhaps I should’ve used a train analogy) because the nerve system has been damaged. The symptoms can impact everything from eyesight, memory and movement to thoughts and feelings.

MS fills me with fear. I watch my mother lose who she used to be, fading away into her disease. MS is slowly taking her away from us right in front of our eyes and there is nothing we can do about it. One of the hardest things for a child is watching your parent, your world, struggle both physically and mentally.

I have watched her walk with a stick, use a wheelchair outdoors and finally move into a wheelchair permanently. Strangely enough I can’t remember her ever walking. Of course, I know she did but my mind never saved those memories. I guess it never expected it to be a memory I required.

Despite the diagnosis, she continued to live her life to her best abilities, doing things she loved: horse riding, gym, and gardening. I’d like to say I too brought her joy during that time, but I know, at that age, I probably brought more stress than joy! I was young, and struggled to understand why I, unlike any of my friends, was expected to help around the house and essentially step in and care for my mother together with my older brother.

Fast forward to 2020, and I am sad to say she recently moved into a care home and is unable to do those things she loves so much. She takes it in her stride, but it can’t come as a surprise that this is not a place she’d like to spend her days. That’s not to say that the care isn’t fantastic - as a family we acknowledge she is in the best place for her physical health but perhaps not for her happiness. Something particularly hard to admit when you realise your options are running out, it’s that sinking feeling of failing somebody despite knowing the rationale behind it all.

I remember leaving her for her first night alone in her new room. I am no parent, but I can only imagine it feels similar to dropping your child off at school for the first time. You put it off as long as possible, there are tears (on both sides), multiple goodbyes and guilt, and you come back as soon as possible. They say roles reverse and children take on the parenting role. I can wholeheartedly say, it’s true. It’s an eye opening experience.

She recently started Art Therapy. Once a week, a volunteer visits her and they spend an hour or two being creative. The roles have truly reversed as I now find myself the proud parent wanting to showcase her paintings on my fridge (or in this case, my virtual fridge that is LinkedIn – milk never goes off here).

Some of my fondest memories with my mom are food related. Watching the newly revamped ‘Ready, Steady, Cook’ today reminded me of my early school days (Ainsley over Rylan though). I would cycle home from school to get in just in time to watch Red Tomatoes vs Green Peppers with mom, a cup of tea and biscuits in hand (I was only ever allowed two a day... it’s safe to say that rule has well and truly gone out the window!).

In my later years, these memories became kitchen related. My passion for cooking came as a total surprise. What started as a moody teenager huffing and puffing because she had to help her mother in the kitchen, turned into a daughter refusing to hand over the spoon. The MS had a huge impact on my mom’s ability to cook, predominately due to the lack of strength and mobility in her hands and fingers and being wheelchair-bound in a kitchen that was as wheelchair friendly as we could possibly make it.

Christmas morning is by far my favourite. I’d lie in bed and listen out for the familiar kitchen sounds. The hum of the oven fans preparing for the array of dishes, the soft tones of Christmas carols from Canterbury Cathedral, the clanging of oven trays and of course the smell of mom’s homemade mince pies wafting under my door. The baton has been handed over, and I now find myself being watched like a hawk by the head chef who insists on watching over my every move, a glass of sherry or Champagne in hand.

Without realising, she helped me to understand food – flavours, tips and tricks and how it’s more than just food, it’s an experience. She taught me the best recipes and showed me how to bake her famous double sponge chocolate cake. This knowledge and experience has been passed down generation to generation - her great-grandmother to her mother, to her and now to me. It has helped shape my life, in which food plays a big role, inspiring me to create Tjop & Dop, a nod to my mother.

The sound of a knife on a chopping board, the smell of her yoghurt bread or honey and oat biscuits immediately take me back to my mother’s kitchen, one of Beethoven’s many symphonies blasting out of the radio.

Watching MS impact my mom’s life, bit by bit, has been and is, to this day, an emotional rollercoaster. However, it also comes with gratitude and privilege. I feel privileged to have been her carer, her eyes and ears, her writing hand, her carrier, her driver, her chef, her top-shelf-reacher, her joker, but above all, her daughter.

On this International Women’s Day, I want to say thank you to the incredible staff, who all happen to be female, at “De Wiedenhof”; the nurses, ergotherapists, doctors, physiotherapists, neurologists and volunteers who work tirelessly, and always with a smile, to help my mother and many others day in, day out.

And of course, to my mom. I can truly and proudly say, you are my inspiration. You are stronger than you’ll ever realise and braver than most of us can ever dream of being.

Today and every other day, I stand together with and celebrate all those who will not let MS define them.

Finally, to end this somewhat bittersweet piece, I leave you with one of her most funny moments;

*On discussing music*

“Oh I really love that song by Sting… Field of Corn!”

She may be onto something.

Feeling inspired? Visit MS Society to find out how you can help to Stop MS.